Hello

[Lisa11171]

My name is Lisa and I’m a 48 year old woman from East Boston, MA. I was diagnosed as having metastatic breast cancer (already spread to bone) on May 1 of last year (2018). It was a total shock and it still feels surreal. I already suffer from Major Depressive Disorder and Anxiety, for which I’ve been in treatment since my early 20’s. I’m not finding this to be a good mixture of diagnoses, as I’m sure many of you can relate.

I’m ER+ and PR+ and HER2-. I started pain management with my PCP, and I think we have finally found a good combo of painkillers.

I have decided to forego any aggressive treatments and just let this disease progress on its own terms. I just don’t have the strength or desire to fight. The treatments I have tried are Tamoxifen, Anastrozole, Letrozole, and Lynparza. Now that I have discontinued treatment, I am feeling better than I have in a long time. I am spending my time volunteering and seeing friends.

My mother is my main caretaker and we are incredibly close. I regularly see my Oncologist, PCP, Psychiatrist, Therapist, Breast Cancer Social Worker and Palliative Care team. I attend a twice monthly Metastatic Cancer Support Group at my hospital and follow many FB groups.

I love to support and get support from others going through this horrible disease. I am always available to talk to others to listen to how they are coping.

[Puppy_love]

Hi Lisa I’m sorry to hear that you’ve decided to let the disease progress. Mbc is not a death sentence. There are many meds out there that keep the cancer at bay. Have you tried also Ibrance and faslodex ? And medical marijuana can help with pain also.

[Lisa11171 in reply to Puppy_love]

Please don’t feel sorry. This was a long and well thought out decision that I am totally at peace with. I appreciate your thoughts and wish you the best!! ❤️❤️

[Wildwood123 in reply to Puppy_love]

That is what I am doing Ibrance and faslodex I am finding it much more manageable than Letrozole. The only down side is getting tired, however, I am able to golf and then I rest after.

[Puppy_love in reply to Wildwood123]

It’s only been 8 months for me on this treatment. I was on anastrazole first. This is my second battle with with breast cancer. 27 years ago I had a lumpectomy with radiation and tamoxifen. I was clean for all those years and just last year they found it in my lung during my breast MRI. Not sure if any of you have had this type of reoccurrence or breast ca that metastasized at first diagnosis. I never thought this could happen I had no symptoms at all.

[MacroMom]

Hi Lisa;

I was just in Boston last week - it was a beautiful Memorial Day weekend!

Thank you for sharing your story here. I'm so glad you are feeling better now and are enjoying time with friends and volunteering. What a gift that you have your mother's loving support!

I think it's hard for some of us to face the possibility that at some point we may also make the decision to stop aggressive treatment. I have certainly considered it. I truly admire your strength and clarity in making that decision. It sounds like you have a great support team in place too.

So thank you again for posting. I hope others will respond and you will feel comfortable sharing more of your story.

By the way, I have the same type of cancer as you, with mets to bone and liver. I tried Fasoldex and Ibrance for a few months and the liver mets grew and multiplied. I am struggling to make the best decision for the next round of treatment but there are no easy choices. I am going to start palliative care too.

Enjoy the day!

Patty

[Lisa11171 in reply to MacroMom]

Thank you Patty!! It’s so nice to hear support rather than telling me I’m selfish. I’ve made peace with a lot of things I’ve done in my life, believe God is watching over me, and have many family members in heaven that I believe will welcome me when I finally get there, which I really don’t think is anytime soon because I feel wonderful!!

My mother has always been my biggest support and she has stuck with me through so many things. The last thing I would want is to hurt her in any way, but she really understands why I am doing this. The medication mixes with my depression and made me suicidal and she’s already seen me try that three times and I never want her to have to go through that again. Luckily, I was able to vocalize that to my psychiatrist who made sure I got the proper help this time. And once I stopped the cancer treatment those feelings went away and she now is not afraid I am going to do anything.

The weather in Boston is so mixed, we will have a great few days, then it goes back to 40 and raining. I love summer so I take advantage of the sunny warm days and I hope we get many more soon!!

[Hidden in reply to Lisa11171]

Welcome Lisa. You’ve clearly put a lot of consideration into your treatment options. It’s so unfair that you’ve had severe depression etc and now MBC. I can’t imagine how challenging this all is for you. At some point all of us will have to make this decision. I appreciate that many are uncomfortable with that decision and can’t think about it as their own way of coping. That is understandable too. I am someone who likes to be prepared and it makes me feel better when I do so. For example I found a nice nearby hospice for if and when. I feel ok now and remain active bicycling, traveling, doing things I enjoy. Still, I struggle with what may happen next. I like to think I do a good job of embracing the positive each day but can’t ignore when I feel a sense of anticipatory mourning. My counselor encourages me to acknowledge my feeling rather than push it away. When I do this, it allows me to “shed” it even for a while which is good. I find it helpful to hear how others like you are figuring out what is the best for them. I hope you will keep us posted so that we can learn more and perhaps find a way to our own graceful resolution. Good luck.

[Lisa11171 in reply to Hidden]

You definitely sound like a positive person who has grown to accept what will happen will happen. I admire your strength and hope we can keep in touch about how our future progresses. I have so much admiration for you and am hoping for nothing but peace and happiness for you for a long time!! ❤️❤️

[Hidden in reply to Lisa11171]

Thank you!

[Rhwright12]

Hi Lisa!

I think we’ve all been there! Is this helping? How long can I keep this up? Never thought we’d be dealing with chronic illness...I’ve been in IV immunotherapy every 3 weeks for 3 years...Herceptin/Perjeta...Herceptin is now approved in shot form which would cut my time in half but Big Pharma is arguing about the price they can charge! 😱 Anyways!

I had a scaleric super scan 12-14 mets! The bone mets don’t respond to my meds so did some research myself...and started take Essiac Tea in January...improved scan in January...last weeks bone scan said no sign of metastic disease! 🎉...seeing doctor on TH for confirmation of clear scan...Essiac Tea is an herbal supplement that won’t interact with any of your other meds plus it will fight a little cancer...😀

Good luck and praying for a physical mental and spiritual recovery! 🙏🏻💕

[Lisa11171 in reply to Rhwright12]

I’m so glad you found something that works for you. I believe we all should be able to make our own choices and be able to find what works best. I wish you all the best!!! ❤️❤️❤️

[Lisa11171]

Thank you so much! Believe me, I had long conversations with my Oncologist, PCP, and Psychiatrist regarding my decision and they even made me meet with an additional psychiatrist for a consultation to make sure I had the capacity to fully understand what my decision meant, and even he went back and told them that I clearly had given this a lot of thought and had very reasonable and logical reasons for making this decision. I am at peace with it and I wish you the best of luck with your treatments. ❤️❤️❤️

[Hidden]

I understand how difficult is is as I also have battled depression for years. I was in a fugue state for several months and it wasn’t until the oncology psychiatrist started my on Vivanse that I started to feel good again. My family doctor tried other anti depressants but that wasn’t the cause. It was due to the radiation and cancer. I’m not sure if this might help you but it is worth asking. This group is a wonderful place for support

[Lisa11171 in reply to Hidden]

Thank you! My psychiatrist put me on Provigil, which had no effect while I was on Lynparza, but it is helping me get my energy back now that I’ve stopped cancer treatment. I’m so sorry you also suffer depression. Whenever I reported a side effect from the Lynparza or the hormone meds to my Oncologist, she blamed it on my depression, but after stopping all the cancer drugs and just remaining on my depression meds, all the side effects went away and I’m feeling great. So I don’t have much faith in any cancer treatments. This group is a wonderful place and I wish you all the best with your treatment!! ❤️❤️❤️

[Hidden in reply to Lisa11171]

It is so frustrating when doctors blame one illness for all your symptoms. That is what happen with me before my cancer diagnosis. I had increasing horrible pain in my hip along with diminished mobility (dragging my leg) and my doctor kept saying a tear in the cartilage. Finally my neurologist took pity on me and sent me for an MRI on my hip and it was cancer. I was so angry.

[Lisa11171 in reply to Hidden]

Same here!! I too was told the pains in my hip radiating down my leg was sciatica. It wasn’t until they found the breast cancer that they did a PET/CT scan and found Cancer in my bones. Only then did I get pain meds. Why don’t they believe us??

[Hidden in reply to Lisa11171]

The same here. My doctor was throwing pain meds at me once I got my diagnosis but before she said take Tylenol. I laid in bed and cried with the pain but nobody believed me. They didn’t find the breast cancer until the biopsy on my hip came back. Then they had to search to find a small spot in a duct.

[Red71]

While your decision would not be my decision, I firmly believe that we are all entitled to make the decisions that are right for us, without any shaming from someone who has made a different decision. Here in Oregon we have the ability to choose assisted suicide if we have a life ending disease. I may or may not opt for that when I can no longer control my disease but I like the fact that it is an option, just one I’m not ready to think about yet . If I choose that option I would hope that support group would not try to talk me out of it. I’m sorry that MBC has complicated your life but know that we are all here to extend a hand when you need it and that we welcome your help if we need it. No matter how I am, being able to help someone else always makes me feel better and I’m sure that everybody on this board feels the same way.

Elaine

[Lisa11171 in reply to Red71]

Thank you Elaine! Massachusetts, where I live, would never allow that law, which I think is ridiculous. There comes a point when people are in so much pain or in a vegetative state that I firmly believe that should be legal everywhere. Of course, I’m nowhere near that point yet, but someday I’m sure I will. I wish you the best of luck with your treatments and hope everything is currently going well. ❤️❤️❤️

[Red71 in reply to Lisa11171]

Right now things are going very well! My last scans (last week) were great. I will continue to fight as an example to my grandchildren. I will not consider that option until all my other options run out and life is too painful, but I’m hoping for a long time yet. I’m a naturally “up” person but I have friends that have struggled with depression. It’s a horrible disease and if your cancer meds make it worse, I can understand your decision. Elaine

[Hidden]

Hi Lisa! Your decision is the best decision for you and I support and respect your decision. I wish for your depression to subside so you can fully live in peace and happiness, for a very long time!

[Lisa11171 in reply to Hidden]

Thank you! Unfortunately, the depression has been here since I was in my teens, so I doubt it’s ever going to disappear, but it’s not rearing it’s ugly head at the moment so cross your fingers it does stay away for a long time!! I wish you he best also and hope you have a long and happy life!!! ❤️❤️❤️

[Hidden in reply to Lisa11171]

Thank you Lisa!❤️

[mariootsi]

I will pray for healing for you in your decision.

There are however so many treatments out there.

We each have to make our own decision.

[Lisa11171 in reply to mariootsi]

Thank you for being so understanding and open minded. I really appreciate it. I wish you the best in your treatment and hope you have a wonderful day today. ❤️❤️

[mariootsi in reply to Lisa11171]

Thank you Lisa. We are neighbors. I'm in Connecticut! My daughter went to Emerson in Boston and my late husband and I lived on the Cape for awhile!

[Lisa11171 in reply to mariootsi]

Awesome! Let me know if you ever make it back up to Boston!!

[mariootsi in reply to Lisa11171]

I will.